How Do You Talk To Someone Who Has Cancer?

Last week my wife and I went into hospital to get me inducted into the process of external beam radiation. I’ll spare you most of the detail. It largely involved a CT and MRI scan to ensure that the radiation only hits the affected areas and to minimize radiating healthy parts of my body.

Radiation Treatment according to the Auckland Star in 1903

Anyway, as I walked to the bathroom (part of the process is having the same amount of fluid in my bladder every visit), a woman piped up that she had more hair than I did. Her punchline was that this was because she was wearing a wig. I was taken aback, thinking “how do I talk to someone who has cancer?”

Then of course I realized that I have cancer and people will be wondering  how to talk to me. Funny how you have these moments of lucidity!

I realized that I now have the right to share black humor with other cancer sufferers because we are all on the same boat, so I quipped back that losing my hair wouldn’t be a problem for me.

I think humor is a very important aspect of health. People survive many tough times by engaging their sense of humor as my friend the Joyologist Pat Armitstead will attest to.

So back to my new compatriot under the wig. When she was called for her appointment, they asked her if she was well. REALLY? She responded with “I wouldn’t be here if I was!”

As she went off to her appointment I pondered on this topic and was a little disappointed in myself. Clearly she was feeling stressed and I could have sat down with her, engaging with a bit more of a joke or a chat. I will do that in future if I have the opportunity, particularly after my first bombardment with radioactive isotopes. Having become a veteran of cancer treatment, I will feel more empowered.

So how do you talk to someone who has cancer? Just like you would talk to anyone else, just keep in mind that they have a lot on their minds and may be distracted, oversensitive, tired, confused and most likely a little stressed. Lighthearted would be a good place to start. Some of us will be open to conversations and some won’t. Respect that either way.

How should you not talk to someone about cancer? The other day I was in the office lunchroom and an “exspurt” (deliberate misspelling) was giving an oratory on cancer. I was disappointed because he’s a nice guy and he obviously didn’t know that I have cancer. Anyway this kind hearted expert proceeded to tell anyone within earshot that as soon as any kind of cancer gets you, it’s all over Rover. “It will kill you, maybe not today or tomorrow,  but they all die from it”, he expounded.

I quietly left the room thinking that in our business, we not infrequently complain that every man and his dog are traffic engineering experts, telling us how to do our job. So if you have an opinion like that, I’d appreciate not hearing it. You never know who you are standing next to and what they are dealing with.

Footnote: This is my third blog about my cancer journey and I had some trepidation about sharing my adventure. It is helping me work through some of my thoughts, but more importantly:

6 people have now come to me and told me that they are going to get tested, motivated by my story and that’s really exciting. If I can help one person, who like me, is in an early treatable stage of cancer, that otherwise wouldn’t have known about it, what a wonderful thing that would be.

I really have appreciated the support from friends, family, colleagues and total strangers, some who have shared intimate experiences and all with kind thoughtfulness.

Don’t be afraid to talk to me or ask me questions, or simply leave a comment. Prostate or any cancer should not be a taboo subject.

You Are Now Uninsurable!

These are the words Tom, my insurance broker and consultant said to me a month or so ago when I told him I had Prostate Cancer. Not too long previously I had reduced my life cover and the delay before I can claim on my income protection insurance from 2 to 3 months off work, against his advice I must admit.

By David Fletcher; Dominion

I have spent a fortune on Life Insurance and Income Protection Insurance premiums over the years and never once made a claim. We often debated whether we should drop them and thought about how much money we would have saved if we had put the same amount of money in the bank.

It turns out that there is some cover that I may be able to access from the Income Protection Insurance and I am working through a pile of forms at the moment to prepare a claim. I wouldn’t have known about this cover if it wasn’t for my broker Tom Fox of Canopy Group, for which my sincere thanks.

So far the gap between what Southern Cross has paid and my cancer related expenses is probably in the region of $15,000. A pittance compared to what some people spend on more difficult cancers. Of course I don’t know what’s ahead. I have a little sick leave up my sleeve so if I find myself feeling too tired or unwell to work as a consequence of the radiation treatment, I’m OK, but I’d hate to think of what my situation would be like if I didn’t have my insurances.

So here’s the thing. Insurance is a grudge purchase. We don’t expect to claim and the insurance companies hope we won’t. That’s how they make money and that’s why as you get older the premiums keep going up in proportion to the risk. It’s often the first thing to go when times are tough.

We do have public health, but chances are if I had to rely on it, I would be on a waiting list while the tumors grow and the likelihood of being able to get treatment outside of my work hours is probably next to zero in which case my job could have been at risk. I must say my employer has been fantastic and very supportive which is awesome, but financially its my burden.

I cannot get buy any new insurance, I can’t ever increase my cover. So here’s another piece of unsolicited advice from me:

If you are in your 50’s (and I have lost friends much younger from cancer and other conditions) get yourself some cover before you have the PSA test, so that you can honestly say that you have no known conditions, because you don’t. As soon as it is on record with your GP or specialist that you have cancer, it’s too late.

My Prostate Cancer Might Save Other Lives

This could be boring, so stop now if you don’t want details, but after this if you don’t mind. So far since I wrote my I have Prostate Cancer blog, 4 people have said they will now go and get PSA tests. If I can help one person to catch it early like I did, then going public on this would be a huge success. It’s just a simple blood test.

Many thanks to those of you who left me messages of support on my various social media pages. It really is appreciated. Guys, you don’t need to have the digit inserted in most cases. In my case that did nothing other than make my sphincter smart for 10 minutes. What is going to save my life is the fact that I had multiple tests and each test the PSA level was higher than the previous one. I am still within the level that is considered unlikely to have tumors and I have 4 or 5.

When I first found out I had cancer I read all the material, visited Dr Google, rang the cancer society for info and bought a book Winning the Battle Against Prostate Cancer, which came highly recommended. But I wouldn’t recommend any of them unless you need to. It’s pretty ugly reading about the possible side effects of the treatments. I joined a cancer community, which is cool, but not really for me.

Then I did my best to put it out of my mind until I had to think about it, which is now. So while I have been on active surveillance, other than tests and biopsies, I did my best to put it out of my mind. No point in dwelling on it any more than you need to.

So this blog is mostly a journaling exercise on my part to help me work through my trip to remission. If it helps other people, awesome, if no one reads it, that’s cool too.

So the next blogs will be about my journey. It’s probably of most interest to people who first find out they have cancer and perhaps to those who want to know how to relate to someone who has this condition.

It’s kind of interesting because I don’t want this to define me, I have more important things in my life like music, family and a job I am passionate about. I’m not after attention or sympathy. The journaling may be a catharsis of sorts and may answer questions for some people. I’m open to questions or comments and all opinions and experiences are mine. I’m not a doctor. Don’t rely on me for any medical advice other than if you are a male over 50, IMHO start getting PSA tests with your annual check up.

I have Prostate Cancer

HOPE: Taken in the 2013 Relay For Life when I did my first marathon distance (took me almost the whole 24 hours!)

I was of two minds as to whether to share this, but it is one way of telling my friends, readers, colleagues and associates without having to tell the same story to everyone over and over. It’s not an easy subject to talk about. I’m not comfortable telling it and I know other people find it awkward to know what to say to me, so this is an easy option for all of us. Of course most don’t know yet because it was only a couple of weeks ago that I found out that it is serious.

Technically I shouldn’t know that I have cancer. I only know because my wife kept pushing me because of the health advertising and the fact that we have a huge number of people in New Zealand who have it.

I went to the doctor and said I believe there is a PSA blood test I can get and he firmly prompted me up onto the medical bed in his surgery and told me to drop my pants for the digit test. I didn’t want to but had complied before I even realized what was happening. I’ll spare you the details, other than that my virgin sphincter was sore and uncomfortable for a little while. Since that time I’ve become accustomed to being poked and prodded by strangers and am getting used to it. I know on the scale of 1 to 10 of things people endure, this doesn’t even get off the starting blocks. For now anyway.

The main point of this post is that my PSA at the time was 3.2. The doctor had been monitoring it in blood tests previously and whilst it was within normal levels, it had been increasing every test, always up. So we agreed at I should go and see a urologist.

I had a biopsy about a year ago and they found a few small malignant low grade tumors and I opted for active surveillance. I should have had another one 6 months ago but we seemed to miss each other. I tried eating very expensive sea cucumber TBL12, which didn’t agree with me very much in taste and made me feel queasy, but it was worth a try. Some people swear by it.  I also tried Pomi-T, a herbal extract approved by the FDA, but when I had another biopsy in October I was up to 4-5 tumors, still low grade but growing quickly.

So here’s the thing. There are a lot of stories and debates about whether you should be tested. Many people say that you’d be better off not knowing,  but if I hadn’t, in another  year I would probably be in a significantly worse situation and I’d still be in my 50’s. I might think differently if I was in my 70’s or 80’s.

I was keen to continue active surveillance which means more biopsies and tests, because most of the time I wouldn’t be thinking about it (but you do). The specialists strongly urged me to reconsider and having read extensively and asked lots of questions, I have opted for external beam radiation. If anyone wants to know why, I’m happy to explain my rationale, especially if you are going through the same process. Ultimately it’s a personal decision. They all have nasty side effects, but it has to do with age and lifestyle. I start radiation on 7 December for 8 weeks.

This particular blog is going to focus on whatever I feel like writing about, which is not business. It has always been my soapbox. So if you want more about technology, location based services and futurism, I suggest you ignore this one and follow me at SoLoMo Consulting and The Future Diaries.

The one hope I have from this, besides helping me process my feelings through this time, is that someone who was resisting the urge to get tested might give it a go. Already I know of one person who has been putting it off for years has made a doctor’s appointment. I read some statistics that said PSA tests have false positives and only 1 in a large number of people tested actually end up having cancer. Therefore getting tested is a waste of time.

So I’m that one in a large number whose life will be saved through getting checked out, despite having no symptoms or problems. I like living. I haven’t achieved everything I want to achieve in my work, haven’t seen all of the world and enjoyed lots of special family moments yet to come. I have music and songs to write and perform. I have many more trips to make around the sun. I still have a big bucket list.